See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/234031996

Exploring the Development of Existing Sex Education Programmes for People

with Intellectual Disabilities: An Intervention Mapping Approach

Article  in  Journal of Applied Research in Intellectual Disabilities · December 2012

DOI: 10.1111/jar.12017 · Source: PubMed

CITATIONS READS

65 530

4 authors, including:

Dilana Schaafsma Gerjo Kok

Hogeschool Fontys Maastricht University
18 PUBLICATIONS   427 CITATIONS    569 PUBLICATIONS   25,880 CITATIONS   

SEE PROFILE SEE PROFILE

L. M. G. Curfs

365 PUBLICATIONS   8,371 CITATIONS   

SEE PROFILE

Some of the authors of this publication are also working on these related projects:

Preffi View project

FASTRACS View project

All content following this page was uploaded by Gerjo Kok on 30 December 2013.

The user has requested enhancement of the downloaded file.


Journal of Applied Research in Intellectual Disabilities 2013, 26, 157–166
Exploring the Development of Existing Sex
Education Programmes for People with
Intellectual Disabilities: An Intervention
Mapping Approach
Dilana Schaafsma*,†, Joke M. T. Stoffelen*,†, Gerjo Kok*,† and Leopold M. G. Curfs
*Work and Social Psychology, Maastricht University, Maastricht, the Netherlands; Gouverneur Kremers Centrum, Maastricht, The
Netherlands; ‡Clinical Genetics, Maastricht University, Maastricht, The Netherlands
Accepted for publication 11 July 2012
Background People with intellectual disabilities face
barriers that affect their sexual health. Sex education
programmes have been developed by professionals
working in the field of intellectual disabilities with the
aim to overcome these barriers. The aim of this study
was to explore the development of these programmes.
Methods Sex education programmes geared to people
with intellectual disabilities were examined in the
context of the Intervention Mapping protocol. Data were
obtained via interviews with the programme
developers.
Results All programmes lack specific programme
outcomes, do not have a theoretical basis, did not
Introduction
In the past two decades, more knowledge has become
available on how to develop better health promotion
programmes. This influences how we develop sex
education programmes nowadays. We now know that
providing people only with information will not make
them change their behaviour. Behaviour is also
influenced by other determinants, like our attitude
towards the behaviour, our confidence about
performing the behaviour (self-efficacy) and how the
behaviour is perceived by others (social norms)
(Schaalma et al. 2004; Kirby & Laris 2009).
People with intellectual disabilities face challenges in
the area of sexuality that might differ from the
challenges their non-disabled peers face. For example,
people with intellectual disabilities tend to be less
informed about sexuality, have fewer sexual
experiences, have more negative attitudes towards
© 2012 Blackwell Publishing Ltd
Published for the British Institute of Learning Disabilities
‡,†
†
involve members of relevant groups in the development
process and lack systematic evaluation.
Conclusions Based on our findings and the literature, we
conclude that these programmes are unlikely to be
effective. Future programmes should be developed
using a more systematic and theory- and evidence-
based approach.
Keywords: assessment, intellectual disabilities,
Intervention Mapping, sex education, sexual health,
sexuality
sexual activities and have more experience with sexual
abuse, often as victims, than those without intellectual
disabilities (McCabe 1999; Murphy & O’Callaghan 2004;
Servais 2006). These problems affect their sexual health
and, consequently, their quality of life. Studies have
shown that sex education can influence important
determinants, like social or behavioural skills
(Miltenberger et al. 1999; Egemo-Helm et al. 2007;
Hayashi et al. 2011), decision-making skills (Khemka
et al. 2005) and knowledge (Lindsay et al. 1992;
McDermott et al. 1999) in a positive way.
The aim of our study was to explore the development
of existing sex education programmes. Sex education
programmes have been developed by professionals who
work in the field of intellectual disability to provide
direct-care staff and parents a tool for improving the
sexual health of people with intellectual disabilities.
Little is known regarding how these sex education
programmes are developed and how effective they are.
10.1111/jar.12017
158 Journal of Applied Research in Intellectual Disabilities
Interviews were held with the developers of the
programmes. Intervention Mapping (Bartholomew et al.
2011) was used as a guideline.
Intervention Mapping provides a systematic
framework to the development of theory- and evidence-
based programmes (Bartholomew et al. 2011).
Intervention Mapping describes the process of
programme development in six steps: (i) needs
assessment, (ii) specifying programme outcomes, (iii)
selecting theory- and evidence-based intervention
methods and practical applications, (iv) designing and
organizing the programme, (v) specifying adoption and
implementation plans and (vi) generating an evaluation
plan.
In the first step, the needs assessment, the problem
for which a programme should be developed, is
analysed. In this step, programme developers explore
the groups involved or impacted by the problem, the
behaviours related to the problem, environmental
factors influencing the problem and the relevant psycho-
social determinants of the problem. This information
can be obtained by doing qualitative and/or
quantitative research. A qualitative technique that is
being explored for eliciting responses in our particular
target population, people with intellectual disabilities, is
the Nominal Group technique (Tuffrey-Wijne et al.
2007). After the analyses have been carried out,
adequate decisions can be made for prioritizing
behaviours, expected outcomes, environmental
conditions and their determinants for change.
In the second step, programme developers determine
the expected outcomes of the programme, which are
based on theory, evidence and input from relevant
groups, like members of the target population and
implementers. When formulating these programme
outcomes, it is important to state what the target group
needs to learn and do as a result of the intervention.
Also in this step, change outcomes are formulated. This
change outcomes link the determinants that need to be
changed to specific and realistic performance outcomes
for the desired behavioural and environmental
outcomes.
In the third step, programme developers select
theory- and evidence-based methods that can be used to
change the psycho-social determinants of the behaviours
that were identified in the first step and converted into
outcomes in the second step. All conditions for the
method must be met in order for it to be effective. The
methods subsequently need to be translated into
practical applications, which are actual materials and
activities that fit the specific target group and the
context of the intervention. It is important to involve
programme implementers and members of the target
group in the selection of the theoretical methods and
practical applications.
In the fourth step, all of the components that have
been developed are put together to make one coherent
programme. Plans are made for pilot-testing and the
production of materials. Again, it is imperative that
members of the target group are involved in the
development and testing of the materials.
In the fifth step, the programme is implemented. This
fifth step starts as soon as it is clear who the
implementers of the programme will be. It is necessary,
in this step, to determine how the programme can be
efficiently realized on a larger scale. Involvement of the
intended programme implementers and implementation
decision-makers (e.g. agents involved in policy-making)
is thus crucial in this process, as these people can offer
insight regarding not only how programme imple-
menters can be motivated to carry out the intervention
but also what kind of support is needed during the
implementation process.
The final step of Intervention Mapping entails
developing an evaluation plan. This involves assessing
whether the measurable outcomes stated in the second
step have been met.
The adaptation of the Intervention Mapping protocol,
which was used for this study, can be found in Table 1.
Materials and Methods
Selected sex education programmes
The sex education programmes were selected if they
were about sex education, targeted people with
intellectual disabilities, and were currently in use in the
Netherlands. We excluded programmes that only
focused on providing sex education in school settings
and programmes that focused primarily on preventing
sexual abuse. A number of sources were used to
retrieve information about existing sex education
programmes, namely the Internet, sexologists and other
professionals working with people with intellectual
disabilities. In total, five sex education programmes
were selected for this study (Table 2).
Sample
Eleven programme developers of five different sex
education programmes were interviewed. Two programme
developers of one programme were interviewed
© 2012 Blackwell Publishing Ltd, 26, 157–166

Table 1 Adaptation of the Intervention Mapping process for
the interviews
Needs assessment
1. Give a description of the problem or problem behaviour.
2. Which factors influence the problem?
3. Give a description of the target group(s) of the programme
Programme outcomes
1. Which behaviours and environmental conditions need to be
changed in order to improve quality of life?
2. Were the changes formulated in terms of outcomes? And
what are the outcomes?
3. While formulating the outcomes, have changeable factors
been taken into account?
Theory- and evidence-based methods and practical
applications
1. Were members of the target group involved in the
development of theoretical methods and practical
applications?
2. Which theoretical methods have been used and why?
Programme development
1. Were members of the target group consulted about the
design of the programme?
2. Were the outcomes incorporated in the programme? And in
what way?
3. Were the materials tested before implementation?
Implementation
1. Were the programme implementers and implementation
decision-makers involved?
2. Were potential barriers identified and taken into account?
(e.g. policy, motivation, planning, education level)
Evaluation
1. Has the programme been evaluated?
2. Which measurement instruments have been used?
separately resulting in a total of six interviews (on
average  60 min.). The number of people interviewed
in a single interview ranged from one to four people
and included a psychologist, behavioural experts, a
communication expert, sexologists and programme
designers. Two interviewers carried out all interviews.
The programme developers were approached
individually by e-mail, and all agreed to participate in
the study.
Procedure and interview topics
In all interviews, one of the two interviewers functioned
as the primary interviewer. Five of six interviews were
held in a formal setting, either at the university or at the
institution where the participant worked. The other
interview was conducted at a participant’s residence.
The interviews were semi-structured. Topics were
© 2012 Blackwell Publishing Ltd, 26, 157–166
Journal of Applied Research in Intellectual Disabilities 159
derived from Intervention Mapping and were as
follows: the needs assessment, the programme
outcomes, the theoretical methods and applications, the
programme development, the implementation and the
evaluation (Table 1). The participants received an
overview of the topics prior to the interview so that
they could prepare in advance.
Data processing and analysis
The interviews were recorded with a digital voice
recorder and then transcribed. To check for and correct
any missing or incorrect information, the completed
transcripts were sent to the programme developers for
feedback. Once approved, the transcripts were imported
into a software program for qualitative data analysis
(NVivo 8). A coding scheme derived from the topics
discussed during the interviews was employed. A
second researcher then validated this coding by topic.
Discrepancies between the first and second researcher
were resolved through discussion and consensus. Once
the topic codes were agreed upon, content was further
assigned to categories that were later also validated by
the second researcher. Then, the list with scores per
category was sent to the programme developers for
verification. Of the six interviews, four were returned
with feedback. The feedback was subsequently
incorporated in the existing list of categories and then
compiled to make up the final list of categories.
Results
Based on the data received from the interviews, we
divided the information about the needs assessment into
two topics, problem description and determinants, and
information about the theoretical methods and practical
applications into theories, and theoretical methods and
practical applications. Therefore, the results section
consists of eight topics: problem description,
determinants, programme outcomes, theories, theoretical
methods and practical applications, programme
development, implementation and evaluation.
Problem description
During the interviews, we found that programme
developers had trouble describing the health-related
problems that were the reason for developing the
programme. This suggests that identifying the problem
and its related factors might not be a significant part of
the development process. It was mentioned that sexual
160 Journal of Applied Research in Intellectual Disabilities

Table 2 Overview of the sex education programmes described in this article

Course
Number Content Receiver1 Giver Group/Individual available

1 Manual/Workbook Mild (adults) Direct-care staff Both No

Four DVDs Parents
Four story books
2 Manual Mild/Moderate Direct-care staff Individual Yes
Workbook (>12 years) Parents
Stickers
3 Manual Mild Direct-care staff Both Yes
CD Parents
4 Box Moderate2 Direct-care staff Individual No
Manual Parents
Set of
photographs
Drawings
Puzzles
Set of icons
5 Box Mild Direct-care staff Both Yes
Manual Parents
Sheets with
3D images

1
Level of intellectual disability (mild: IQ 50-70; moderate: IQ 35-50).
2
People who are supposedly not able to form a relationship.

abuse was a large issue within the group of people with
intellectual disabilities as well as sexual problems and
other problem behaviour, such as sexually inappropriate
behaviour (Table 3). However, no specific health
problems were described by the programme developers.
Table 3 Description of problem as stated by programme
developers
With respect to environmental factors, it was
mentioned that on the interpersonal level there was a
lack of confidence in the environment to talk about
sexuality and that there is a taboo on talking about
sexuality. On the organizational level, lack of adequate
material and lack of privacy/room were stated as
problems.
Determinants

1 2 3 4 51 When the programme developers were asked to give a

description of the problem, they generally gave a
Individual level description of determinants influencing the problem at
Sexual abuse x x – – – the individual level (Table 4). These can be divided into
Sexual Problems – – – x two types of determinants, unchangeable and
Other problem behaviour – x – x – changeable. Unchangeable determinants were, for
(e.g. inappropriate behaviour)
example, low IQ level and low social–emotional level.
Interpersonal level
And a changeable determinant was, for example, lack of
Taboo (in environment) x – – – –
knowledge concerning topics related to sexuality.
Lack of confidence (by staff) x – x x –
Organizational level The programme developers of two programmes
Lack of adequate material x – – x – mentioned determinants on the interpersonal level, such
Lack of privacy/room – x x – – as dependence of client on caregivers, beliefs about
sexuality and Internet access to pornography. The
1
Numbers refer to the programmes in Table 1. programme developers of two other programmes

© 2012 Blackwell Publishing Ltd, 26, 157–166

 Journal of Applied Research in Intellectual Disabilities 161

Table 4 Description of determinants influencing the problem

as stated by the programme developers
Theories
Programme developers were asked to describe which
1 2 3 4 5 theories were incorporated into the programme. The
programme developers of one programme mentioned
Individual level
applying communication models to identify a person’s
Low IQ level x x x x x
communication level and the programme developers of
Low social–emotional level – x x x x
Autism – x – x x another programme use the hermeneutic circle as a way
Lack of sexual knowledge x x x x x to get a complete overview of a persons’ history, social–
Lack of social skills x x – – emotional level, cognitive level, etc. No theories on
Negative attitude (towards their sexuality) – x – – x influencing behaviour or psycho-social determinants
Vulnerable to sexual abuse – x – – – were pointed out.
Interpersonal level
Dependence client – x – – –
Vision (on sexuality) – x x – – Theoretical methods and practical applications
Internet (access to pornography) – x – – –
Programme developers gave descriptions of practical
Organizational level
applications they incorporated into the programme, and
Policy (absence of) – – – x x
the underlying theoretical methods of these strategies
were separately identified by two researchers. It was not
checked if all the conditions, governing effective use of
mentioned a determinant on the organizational level,
the method, were met. This section presents the
namely the absence of policy.
theoretical methods that were identified in several
categories derived from Bartholomew et al. (2011)
Programme outcomes (Table 6). In the category ‘basic methods at the
individual level’, tailoring was reported by all the
The outcomes described by the programme developers
programme developers. Other methods used were
all focus on the individual level (Table 5). Knowledge
persuasive communication (2), participation (2), active
(4), tailoring (4) and empowerment (5) were the
learning (2), individualization (2), modelling (1),
outcomes most mentioned. Knowledge stands for
facilitation (1) and reinforcement (1). In the ‘increase
increasing the knowledge of people with intellectual
knowledge’ category, images were mentioned by all
disabilities in different areas of sexuality. With tailoring
programme developers. Other methods to increase
developers meant that each programme had to be
knowledge were increasing memory and understanding
adjusted according to the clients’ needs and wishes.
(2), providing cues (2), and discussion (1). In the third
Empowerment was described as teaching someone to
category ‘change skills’, guided practice was the most
make his or her own decisions. Teaching skills were
often used method (4). Other methods were goal setting
only mentioned by the programme developers of one
(3), setting graded tasks (2) and planning coping
programme and so was enjoying sexuality. No
responses (1). In the two remaining categories,
outcomes on interpersonal or organizational levels were
‘changing social influence’ (1) was mentioned as a
stated.
method to change self-awareness and ‘social
comparison’ (1) was mentioned as a method to change
Table 5 Description of programme outcomes as stated by the social influence.
programme developers

1 2 3 4 5
Programme development
The programme developers of one programme
Individual level
consulted implementers, in this case direct-care staff,
Knowledge x x x – x
during the development of the programme. When it
Teaching skills – – x – –
comes to testing the materials, the programme
Tailoring x – x x x
Empowerment x x x x x developers of one programme showed the raw material
Enjoying sexuality – – – – x to clients and direct-care staff in different parts of the
country. The programme developers of a second

© 2012 Blackwell Publishing Ltd, 26, 157–166

162 Journal of Applied Research in Intellectual Disabilities

Table 6 Overview of the methods used in the five sex education programmes

Description 1 2 3 4 5

Basic methods at the

individual level
Tailoring Components of programme are adjusted to x x x x x
learner’s characteristics
Persuasive Guide learners towards action using arguments x – x – –
Communication
Participation Assure high-level engagement of the participants’ group x – x – –
in problem solving, decision making and change activities
Active learning Learning from goal-driven and activity-based experience x x – – –
Individualization Provide learner with opportunity to have personal questions answered – x x – –
Modelling Providing an appropriate model being reinforced for desired action x – – – –
Facilitation Creating an environment in which barriers are reduced – x – – –
Reinforcement Linking behaviour to a consequence to increase its rate – – x – –
Methods to increase
knowledge
Images Use of artefacts that have similar appearances to some subject x x x x x
Increase memory and Use of images, metaphors, rehearsing or repeating information x x – – x
understanding in own words, and similar applications
Providing cues Assure the same cues to be present at time of learning and the time of retrieval – x – x –
Discussion Informal debate on a topic, guiding learner to activate correct schemes x – – – –
Methods for changing
attitude
Self-re-evaluation Cognitive and affective assessment of one’s self-image with and without x x x – –
unhealthy behaviour
Elaboration Stimulating learner to add meaning to the information x – – – –
Anticipated regret Focus on feeling after unintended risky behaviour x – – – –
Methods for changing
skills
Guided practice Prompt rehearsal of behaviour, discuss the experience and provide feedback – x x x x
Goal setting Prompt planning towards target behaviour x x – x –
Setting graded tasks Starting with easy task and increasing difficulty until target behaviour is performed x – – x –
Planning coping Determining potential barriers and present ways to overcome these x – – – –
responses
Methods for changing
self-awareness
Awareness raising Providing information about consequences and alternatives for problem behaviour – x – – –
Methods for changing
social influence
Social comparison Comparison to non-expert others in order to evaluate oneself – – x – –

programme have shown visual materials to their clients

and enlarged the material after receiving feedback that
the size was too small. And the programme developers
of a third programme showed their clients drawings
and found that photographs were clearer to them than
drawings. Furthermore, programme developers
indicated that people should be cautious when dealing
with a client who has a history of or is currently
experiencing sexual abuse.
Implementation
None of the programme developers mentioned
involvement of the implementation decision-makers to
plan implementation, while only a few barriers for
implementation were indicated. First, programme
developers of one programme mentioned that the
professional caregivers’ lack of confidence and norms
could be of influence. Programme developers of a second

© 2012 Blackwell Publishing Ltd, 26, 157–166


programme mentioned time as a barrier, meaning it takes
time to get familiar with the materials and methods of the
programme. Finally, it was mentioned that retrenchment
and lack of time given by the institution could be of
influence. No clear explanations were given on how to
overcome these barriers.
Evaluation
All interviewees mentioned that there was never an
evaluation study conducted of their programme.
Discussion
The purpose of this study was to assess the
development of sex education programmes for people
with intellectual disabilities, using existing sex
education programmes from the Netherlands as an
example. The programme developers who were
interviewed all share the same passion to improve the
sexual lives of those with intellectual disabilities and
were therefore highly motivated to participate in this
study. The programmes described in this study are all
practice-based. An adaptation of the Intervention
Mapping steps was used as a guideline to describe the
process and to identify blank spaces and potential for
improvement.
Sex education for people with intellectual disabilities
may be improved in five areas. The first area is the
needs assessment. Description of the problem was
usually in terms of determinants instead of focusing on
the health problem in terms of behaviour. The
determinants that were identified were predominantly
on the individual level focusing on the cognitive factor,
social–emotional factors and amount of knowledge. Two
programmes mentioned determinants on the
interpersonal level, and two other programmes
mentioned determinants on the organizational level. It is
clear that the problems that exist in the area of sexuality
of people with intellectual disabilities have to be
identified and made more explicit on behavioural level.
Only then is it possible to find the related determinants
on the individual and environmental levels, which are
important for developing an effective programme.
The second area of interest concerns the outcomes
stated by the programmes. The ones mentioned most
were knowledge, tailoring the programme to the
person’s need and emancipation. Two of these
outcomes, knowledge and tailoring, are represented in
methods that were used; however, it was unclear how
the outcome of emancipation was reflected in the
© 2012 Blackwell Publishing Ltd, 26, 157–166
Journal of Applied Research in Intellectual Disabilities 163
methods. From the needs assessment and the outcomes
stated, it becomes clear that these programmes are only
aimed at the target group, people with intellectual
disabilities. The question remains whether the outcomes
stated by the programme developers are specific and
measurable enough. These requirements are important,
because a useful evaluation study cannot be conducted
if they are not met. Moreover, one should also take
environmental outcomes, directed to implementers and
implementation decision-makers, into consideration.
The third area concerns the theoretical basis of the
programmes. The practical applications that are used
are generally chosen based on previous positive
experiences and the methods in general lack a
theoretical basis, which has a large impact on the
effectiveness of the programme because research has
shown that non-theory- and evidence-based
programmes are not as effective as theory- and
evidence-based programmes (Mullen et al. 1985; van
Empelen et al. 2003; Albarracın et al. 2005; Bos et al.
2008; Peters et al. 2009; van Achterberg et al. 2010; de
Bruin et al. 2010). The theoretical models mentioned
were mostly applied for identifying a persons’ level of
IQ, social–emotional level or communication level.
The fourth area concerns the involvement of the
target groups, programme implementers and
implementation decision-makers. The involvement of
these groups during the developmental process was
minimal. One programme mentioned involvement of
implementers (direct-care staff), but the involvement
was minimal; no involvement was mentioned of
implementation decision-makers. Also, the involvement
of the target group (people with intellectual disabilities)
was limited to testing materials in two occasions. This
lack of involvement is very concerning. Involvement of
the target group is very important for the content and
development of materials, and involvement of
implementers is very important for recognizing
potential barriers for implementation. Finally,
implementation decision-makers are very important
when it comes to policy; it is next to impossible to
implement a sex education programme without good
management support (Mendel et al. 2008).
The fifth area concerns the evaluation of the
programmes. None of the programmes have been
evaluated, which is not uncommon (Kok et al. 2009). As
a consequence, there are no data on the effectiveness of
these programmes.
A comparable study that has been conducted by
Godin et al. (2007), in which they assessed community-
based interventions on HIV/STD prevention, found
164 Journal of Applied Research in Intellectual Disabilities
similar results: lack of a proper needs assessment, no
specific goals described, lack of theoretical basis and
absence of evaluation studies. However, they did not
include the involvement of relevant groups in the
development process in their assessment tool.
In summary, it is clear that programme developers
are very committed and have put much time and effort
into making these programmes, but when we look at
the development process of these programmes, we can
conclude that based on our findings and on the
literature the programmes will most likely not be
effective. Even more so, due to the lack of measurable
outcomes, it will be impossible to do a useful evaluation
study (Rossi and Freeman, 1993; pp. 218). Furthermore,
we would like to note that even though we know from
the literature that different problems exist in the area of
sexuality (McCabe 1999; Murphy & O’Callaghan 2004;
Servais 2006), we found it remarkable that problems,
such as people with intellectual disabilities having fewer
sexual experiences, having negative attitudes towards
sexual activities and having experiences of sexual abuse,
were not as frequently mentioned as was to be expected
beforehand.
Limitations
There are some limitations to this study that should be
taken into consideration. The first is that results reflect
what is said during the interview by the programme
developers and it does not reflect the actual content of
the sex education programme. Therefore, it might be
possible that they have forgotten to mention important
issues due to their lack of knowledge about the
Intervention Mapping process. We did try to solve this
problem by giving the programme developers an
opportunity to provide feedback on two occasions.
Furthermore, the practical applications that were
mentioned were scored by two researchers and put in
different categories of methods. It was not checked if all
the conditions for using the method were effectively
met.
Finally, it must be taken into account that
Intervention Mapping itself has its limitations. It is a
protocol and not a method for developing interventions.
The quality of the interventions that are developed
according to the Intervention Mapping process heavily
depends on knowledge that is already out there, and
time and money for doing extra research, if that proves
to be necessary. Knowledge on the problem behaviour
and its determinants is the foundation of a good
intervention (Bartholomew et al. 2011). When this
knowledge is incomplete, it can be expected that this
has consequences for the effectiveness of the
intervention. The advantage of systematically
developing interventions and writing down the process
of development is that it increases the likelihood that
interventions can be successfully adapted to other
settings, knowledge on what is effective can be more
easily identified and shared, and aspects of the
intervention that turn out not to be effective can be
identified and adjusted accordingly.
Recommendations
For the development of sex education programmes, it is
very important to do a proper needs assessment and get
a clear idea of the problem and the impact it has on the
sexual health of people with intellectual disabilities and
identify the psycho-social determinants of the
behaviours related to this problem. Usually, these can
be found on different ecological levels, such as the
individual level, interpersonal and organizational levels
(Kok, Gottlieb, et al., 2008).
Additionally, the interviews make clear that the focus
predominantly lies on the target group, namely people
with intellectual disabilities who are receiving sex
education. However, other groups should be taken into
account as well, like the programme implementers,
direct-care staff who give sex education, implementation
decision-makers and environmental agents who develop
policy.
Furthermore, as mentioned in the introduction,
previous research has shown that theory- and evidence-
based programmes produce larger effects than non-
theory- and evidence-based programmes. It would
therefore be useful to develop sex education
programmes for people with intellectual disabilities that
are theory- and evidence-based instead of only practice-
based, such as the current programmes.
Moreover, it is crucial to involve members of the
target groups and programme implementers in
the different stages of development, because it adds to
the effectiveness of the programme and increases the
chance of a programme to be successfully implemented.
In addition, to understand what parts of the programme
are effective and what parts need to be improved, an
adequate evaluation plan is necessary. However, in
order to conduct a proper evaluation, it is essential to
have measurable outcomes in a well-implemented
programme (Rossi & Freeman, 1993; pp 218), which are
well described (van der Knaap et al. 2008). It is therefore
preferred to have a systematic and theory- and
© 2012 Blackwell Publishing Ltd, 26, 157–166

evidence-based approach when developing a sex
education programme.
Finally, assessment of intervention programmes by
independent professionals working in the field of
intervention development is important to assure the
quality of these programmes (Brug et al. 2010). This
study shows that an adaptation of the Intervention
Mapping steps can be a useful tool to asses the
development process of sex education programmes.
Summarizing, future research is needed to provide
more information on what problems are affecting the
sexual health of people with intellectual disabilities, and
a more systematical and theory- and evidence-based
approach, such as Intervention Mapping, should be
applied in the development of future sex education
programmes for people with intellectual disabilities.
Acknowledgments
We would like to thank Erik Bosch, Greet Conix,
Paulien van Doorn, Hemmo Drexhage, Stef Gesthuizen,
Madelon Mulder, Frederieke Reitsma, Wilma Scheres,
Carel Smits, Ellen Suykerbuyk, Saskia Voortman and
Jeske Weerdestijn for participating in our study.
Conflict of Interest
No conflict of interest has been declared.
Source of Funding
Maastricht University. No external funding.
Correspondence
Any correspondence should be directed to Dilana
Schaafsma P.O. Box 616 6200 MD Maastricht (e-mail:
dilana.schaafsma@maastrichtuniversity.nl).
References
van Achterberg T., Huisman-De Waal G. G., Ketelaar N. A. B. M.,
Oostendorp R. A., Jacobs J. E. & Wollersheim H. C. H. (2010)
How to promote healthy behavior in patients? A review of
systematic reviews. Health Promotion International 6, 148–162.
Albarracın D., Gillette J. C., Earl A. N., Glasman L. R.,
Durantini M. R. & Ho M.-H. (2005) A test of major
assumptions about behavior change: a comprehensive look at
the effects of passive and active HIV-prevention interventions
since the beginning of the epidemic. Psychological Bulletin 131,
856–897.
© 2012 Blackwell Publishing Ltd, 26, 157–166
Journal of Applied Research in Intellectual Disabilities 165
Bartholomew L. K., Parcel G. S., Kok G., Gottlieb N. H. &
Fernandez M. E. (2011) Planning Health Promotion Programs:
An Intervention Mapping Approach, 3rd edn. Jossey-Bass, San
Francisco, CA US.
Bos A. E. R., Schaalma H. P. & Pryor J. B. (2008) Reducing
AIDS-related stigma in developing countries: the importance
of theory- and evidence-based interventions. Psychology,
Health & Medicine 13, 450–460.
Brug J., Van Dale D., Lanting L., Kremers S., Veenhof C., Leurs
M., van Yperen T. & Kok G. (2010) Towards evidence-based,
quality-controlled health promotion: the Dutch recognition
system for health promotion interventions. Health Education
Research 25, 1100–1106.
de Bruin M., Viechtbauer W., Schaalma H. P., Kok G., Abraham
C. & Hospers H. J. (2010) Standard care impact on effects of
highly active antiretroviral therapy adherence interventions: a
meta-analysis of randomized controlled trials. Archives of
Internal Medicine 170, 240–250.
Egemo-Helm K. R., Miltenberger R. G., Knudson P., Finstrom
N., Jostad C. & Johnson B. (2007) An evaluation of in situ
training to teach sexual abuse prevention skills to women
with mental retardation. Behavioral Interventions 22, 99–119.
van Empelen P., Kok G., van Kesteren N. M. C., van den Borne
B., Bos A. E. R. & Schaalma H. P. (2003) Effective methods to
change sex-risk among drug users: a review of psychosocial
interventions. Social Science & Medicine 57, 1593–1608.
Godin G., Gagnon H., Alary M., Levy J. J. & Otis J. (2007) The
degree of planning: an indicator of the potential success of
health education programs. Promotion and Education 9,
138–142.
Hayashi M., Arakida M. & Ohashi K. (2011) The effectiveness
of a sex education program facilitating social skills for people
with intellectual disability in Japan. Journal of Intellectual and
Developmental Disability 36, 11–19.
Khemka I., Hickson L. & Reynolds G. (2005) Evaluation of a
decision-Making curriculum designed to empower women
with mental retardation to resist abuse. American Journal on
Mental Retardation 110, 193–204.
Kirby D. & Laris B. A. (2009) Effective curriculum-based sex
and STD/HIV education programs for adolescents. Child
Development Perspectives 3, 21–29.
van der Knaap L. M., Leeuw F. L., Bogaerts S. & Nijssen L. T. J.
(2008) Combining campbell standards and the realist
evaluation approach. American Journal of Evaluation 29, 48–57.
Kok G., Gottlieb N. H., Commers M. & Smerecnik C. (2008)
The Ecological Approach in Health Promotion Programs:
A Decade Later. American Journal of Health Promotion 22,
437–442.
Kok G., Maassen R., Maaskant M. & Curfs L. (2009)
Zorgverleners over seksualiteit van mensen met
verstandelijke beperkingen; een kwalitatief onderzoek.
Tijdschrift voor Seksuologie 33, 199–206.
Lindsay W. R., Bellshaw E., Culross G. & Staines C. (1992)
Increases in knowledge following a course of sex education
 166 Journal of Applied Research in Intellectual Disabilities
for people with intellectual disabilities. Journal of Intellectual
Disability Research 36, 531–539.
McCabe M. P. (1999) Sexual knowledge, experience and
feelings among people with disability. Sexuality and Disability
17, 157–170.
McDermott S., Martin M., Weinrich M. & Kelly M. (1999)
Program evaluation of a sex education curriculum for women
with mental retardation. Research in Developmental Disabilities
20, 93–106.
Mendel P., Meredith L. S., Schoenbaum M., Sherbourne C. D. &
Wells K. B. (2008) Interventions in organizational and
community context: a framework for building evidence on
dissemination and implementation in health services
research. Administration and Policy in Mental Health and Mental
Health Services Research 35, 21–37.
Miltenberger R. G., Roberts J. A., Ellingson S., Galensky T., Rapp
J. T., Long E. S. & Lumley V. A. (1999) Training and
generalization of sexual abuse prevention skills for women
with mental retardation. Journal of Applied Behavior Analysis 32,
385–388.
Mullen P. D., Green L. W. & Persinger G. S. (1985) Clinical
trials of patient education for chronic conditions: a
View publication stats
comparative meta-analysis of intervention types. Preventive
Medicine 14, 743–781.
Murphy G. H. & O’Callaghan A. (2004) Capacity of adults with
intellectual disabilities to consent to sexual relationships.
Psychological Medicine 34, 1347–1357.
Peters L., Kok G., Ten Dam G., Buijs G. & Paulussen T. (2009)
Effective elements of school health promotion across
behavioral domains: a systematic review of reviews. BMC
Public Health 9, 182.
Rossi P. H. & Freeman H. E. (1993) Evaluation: a systematic
approach. Sage publications, Newbury park, CA.
Schaalma H. P., Abraham C., Gillmore M. R. & Kok G. (2004)
Sex education as health promotion: what does it take?
Archives of Sexual Behavior 33, 259–269.
Servais L. (2006) Sexual health care in persons with
Intellectual Disabilities. Mental Retardation and Developmental
Disabilities Research Reviews 12, 48–56. doi:10.1002/mrdd.
20093.
Tuffrey-Wijne I., Bernal J., Butler G., Hollins S. & Curfs L.
(2007) Using Nominal Group Technique to investigate the
views of people with intellectual disabilities on end-of-life
care provision. Journal of Advanced Nursing 58, 80–89.
© 2012 Blackwell Publishing Ltd, 26, 157–166